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    Coming to terms...

    Hi Everyone,

    I am new to here and still not really believing I am here!! I have so many questions that I want answers to but it seems like MS doesn't have any answers?

    You know simple things like I have asked my GP and Neurologist "How long will a flare up last?" Answer: We don't know this, it is very individual... "Will my symptoms get worse?" Answer: We don't know this, MS is very complex... "Will the tiredness stay forever"? Answer: It is one of the most common symptoms of MS... Is that a yes or a no?? LOL

    So suffice to say I am frustrated, very. The not knowing is a killer, you know like if you broke an ankle they might tell you cast for 6 weeks, physio for 8 weeks then all is well. Then you know where you are going and can deal with. With MS tough, for me anyway, the numb feet, numb tingling rib cage and tiredness like I have never felt before seem to be with me forever although in reality its only been 6 months.

    Oh and the walking into door frames?? Is that normal? I go to walk say out of my bedroom door and next thing I am banging into the side of it? It is a normal size door frame and I am a small size LOL Weird! I was diagnosed three weeks ago and am now, well since I found this site coming out of denial and attempting to understand it. But what I really wanted to ask at this time was when does the thinking stop?

    Is there a morning you wake up and MS and where it might take you is not the first thing on your mind, or a night when you go to sleep and its not the last thing you think of? I am going on bit sorry, I just have sooo much to say and ask

    My symptoms are not too bad I know, they are just sensory really and the fatigue, that is hard to get used to. I used to love running but a couple of times late last year I tripped on nothing ( I know that sounds mad) and well now with the numbness in my toes I am afraid to start again in case I make my symptoms worse?

    The other thing I find frustrating that MS has brought into my life is that suddenly everyone I know, family and friends (although I haven't told too many people thankfully!), is a Doctor and Nutritionalist!?

    Of course it is all meant with the best of intentions and with love but I have only just found out!? I haven't even got my head around it so no I am not going on a Pineapple diet LOL "Did you try this, have you seen this, I heard this is very good for MS, I read you should etc etc..." Hello people I can't take all this in and I can't try everything that is thrown at me. Least not right now...

    I am a single Mum of two amazing children (early teens) and I work full-time. We follow a very healthy diet, its funny but I feel some people are thinking "what did you do to cause this" but maybe that is me thinking out loud in my own head

    I was also wondering if it is normal (I mentioned this on my last post) that I didn't cry when I was told, wasn't emotional at all, in fact was all positive and fabulous.... Until this week when I seem to be hitting a wall.

    I am hoping this is just me accepting it bit by bit and now three weeks later going through the emotions? Its like I have been on Auto Pilot and now the engine has turned off and I am like "Oh I have MS"

    One thing I really don't want, couldn't bear, is to be defined by it. I am hoping being on here and reading how other people, with worse symptoms that me even, are living their lives well... I know I have gone on and on...and then some! I am sorry about that (there is no blushing face icon)

    You know its like even if no one reads this I have written it, vented, ranted and let it out. That is helping me anyway

    I am not on medication my Neurologist said as my symptoms are sensory (apparently that is not too bad, although it is bothersome!). I have to have two more contrasting MRI's (brain and spine) one in a few weeks and another one four months later.

    If the MRI's show up any further activity, even if no new symptoms I will have to go on medication which scares the crap out of me. But I guess cross that bridge when I come to it. Ok if anyone should take the time to read thank you I have lots of questions but I will break them down into sorter posts This was just a little bit about me

    #2
    Hi, Just want to welcome you, its to bad its because of the M.S. Feel free to ask all your questions and even rant if you want to. You will find a lot of really good people here with many years of experience with the MonSter. once again Welcome. PEACE
    Tortis

    Comment


      #3
      Sadly, there are not many answers for us since everyone is affected differently. It's not like a broken bone. Many people have "flares" that can last any amount of time.

      Others like me, have no flares, just a steady decline in numbness and mobility. There are no "good" days. I also had no reaction when told I had MS.
      I felt it was what it was and we would deal with it.

      Good luck in your future.

      Comment


        #4
        I am so sorry you are dx with this horrible disease. I am in Limbo Land, but have personally known, in my humble opinion, that I have had MS for about 25 years. During a flare, I go to bed every night wondering if I will wake up able to move my legs, or wake up with full vision in both eyes. I wake up every morning grateful that none of this has happened.

        When I have recovered from a flare, I don't think about it at night or in the morning.

        If I get a flu or cold, I start to worry about if a flare will follow. Thank goodness I don't get sick very often!

        This illness is so different for everyone, and I suppose how much and how often you think about it depends on you and your personality (are you generally an anxious person, a negative person, a positive person, an optimistic person, etc.) But, I think you can choose HOW you think about it. And when I start worrying about waking up unable to move my legs or blind in one eye, I try very hard to tell myself that this is ridiculous anxiety that won't change the outcome of anything at all, and then I switch my thoughts to something more relaxing and positive.

        You will learn to live with it, I am sure, whatever course it takes. Good luck to you, and raising your family.
        20+ years of sx - no dx yet - getting close!

        Comment


          #5
          Very Apt!

          MonSter I like that description, very apt Thank you for responding Tortis, I think I will learn a lot from this site and you are right everyone seems very nice and welcoming

          Comment


            #6
            Welcome! This place has such a wealth of information, and coming here you won't feel like you're totally alone with this disease.

            About the walking into door frames, MS does cause people to have poor balance, so that could be why you find yourself doing it.

            I was like you when I got diagnosed. I took it like a champ initially, but then after a week or two, it hit me and I couldn't stop thinking about all the what ifs. It does give you a lot of answers to what has been going on, but the uncertainty of where it will go isn't fun. I know I'm just doing my best to focus on getting better and I'm enjoying the good days as they come. It beats thinking about what MS has done, but those moments come too.

            There are a couple threads that people have started about the advice others without MS have given them. You should read through them. They're definitely good for a laugh.
            Diagnosed 1/4/13
            Avonex 1/25/13-11/14, Gilenya 1/22/15

            Comment


              #7
              Welcome Katk71 I am new to this site and wow I have many of the same questions you posed. Thanks for ranting makes me feel better. I am also new to the MonSter just diagnosed in Nov/12 Will be reading tons on this site.

              Comment


                #8
                Hi Babyduckling,

                You are welcome it made me feel better to There is a lot to learn on here we are lucky to have found this site, even for such crap reasons. I feel better able to cope now knowing there are people who will listen and people who can offer advice and understand. As Tomjadg said it is what it is and it can be dealt with.

                Comment


                  #9
                  KATK71, welcome to MS World. This is a great place to find support, learn from others with people that understand. The first year after dx is tough..so many emotions and feelings...it takes time to sort through it all.

                  I had to share that I too have door frames that are too small and I have been bumping into them for YEARS!! And only on my left side. This symptom for me goes back to the 1990s and had continued. It must be a spatial awareness sort of lession? I don't know, but it definitely something that I deal with regularly.

                  I don't recall anyone else mentioning that as a symptom, so I just had to respond. Hang in there...coping with MS gets easier, but it does take some time. You can do this!

                  Comment


                    #10
                    I bump into doorways and hallway walls all the time, but only since this current flare started. I walk like I'm drunk. I have myoclonic jerking on my left side back and hip.

                    I have fallen into corners of bars and counters and have hurt myself quite badly sometimes.

                    Absolutely no dizziness. I agree... seems to be a spatial awareness thing, or my brain doesn't know where my feet and legs are.
                    20+ years of sx - no dx yet - getting close!

                    Comment


                      #11
                      Black and blue

                      Hi HellsBells1 and MyGirlsMom,
                      I don't get dizziness either I just tend to veer to the left all the time now. Tables and desks don't like me and my poor thighs are permanently bruised as is my left arm from bumping into the doorways. My balance was one if the first things that alerted my GP that something wasn't right when he asked me to walk in a straight line. I hope I am never stopped by Police while driving and asked to do that LOL I just wobble on flat ground I wonder if Pilates or Yoga would be good? You to build up the core muscles? Kath

                      Comment


                        #12
                        WELCOME KATH!!!! it is great to have you here at MS world, but we're very sorry why. This is a great place to come and get answers to your questions. The members here are very caring and compassionate and if we have experience with certain issues we will let you know what we did to deal with them.we also have chat, in addition to these message boards, and we welcome you there also ( love it when new members pop in). Best of luck to you
                        hunterd/HuntOP/Dave
                        volunteer
                        MS World
                        hunterd@msworld.org
                        PPMS DX 2001

                        "ADAPT AND OVERCOME" - MY COUSIN

                        Comment


                          #13
                          I was just diagnosed in December 2012 and am having a tough time coming to terms as well. I fully recovered from my initial episode and then subsequent relapse and handled everything pretty well. I heard a lot of "you're stronger than you think" and "I am so proud of you...". The past few weeks have been way harder emotionally for no apparent reason. I have serious anxiety and overall fear. I get very dizzy in crouded public places, especially if I go alone, so I think that's probably anxiety related or at least anxiety is making that sx worse... I'm driving myself crazy because my MS is CONSTANTLY on my mind! I pray every night that I will soon have days where I feel like "me" again and that MS will not be on the forefront of my mind. I see a therapist on Thursday who specializes in dealing with chronic illness. Wish me luck!

                          Comment


                            #14
                            Hi Kat,

                            I'm a newbie to all of this too. For the last few weeks I haven't been able to shut my brain down. I can't stop thinking.

                            I think it's normal considering the newness of it all. I'm not yet able to stop the thoughts and meditate, and find my centre. Lol! Although I used to give guided meditations. It's almost funny when I think of it.

                            I can't seem to concentrate on anything except when my grand kids come over. I guess this is where we quote the saying: Let time do its thing!

                            Whatever we are going through, we should not judge ourselves. Everything is normal, everything is ok. We grow and learn and adapt... At our own pace. And that's OK!

                            You're in the right place to get help with that process!

                            Be well!
                            When I can laugh at my experiences, I own them and they don't own me!

                            Comment


                              #15
                              Getting pulled over by cops

                              Originally posted by KATK71 View Post
                              Hi HellsBells1 and MyGirlsMom,
                              I don't get dizziness either I just tend to veer to the left all the time now. Tables and desks don't like me and my poor thighs are permanently bruised as is my left arm from bumping into the doorways. My balance was one if the first things that alerted my GP that something wasn't right when he asked me to walk in a straight line. I hope I am never stopped by Police while driving and asked to do that LOL I just wobble on flat ground I wonder if Pilates or Yoga would be good? You to build up the core muscles? Kath
                              Hi KATK71: Well, the good news is that if you did get pulled over by the cops, and they say that you were intoxicated because of a positive Romberg Test (you sway or fall with your eyes closed and your feet together), you would very easily be able to fight it in court.

                              Actually, before a cop asks you to stand with your feet together and close your eyes, (if they do it properly) they must first observe you standing with your feet together and your eyes open. If you have any balance issues with your eyes open, then you have a negative Romberg test, and they cannot continue by getting you to close your eyes. Of course you will fall over or sway with your eyes closed, if you can't stand straight with your eyes open.

                              Even if you have a positive Romberg test, if you showed that you had CNS damage that caused it, besides intoxication, they would not be able to use that as evidence of drunkeness. On the other hand, if you fail a breathilyzer test, your on your own!
                              20+ years of sx - no dx yet - getting close!

                              Comment

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